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Sjögren Europe vice-president (Mascha, on the right) and president (me, on the left) meeting in Amsterdam! More information about us will be provided soon! 10/03/2019
#sjogreneurope#sjogren#sjogrens#Sjögren#Sjogrens#patientsinvolvement pic.twitter.com/f96JlvIdDp
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3th day
#EPFCongress19 Patients as teachers. What can patients teach professionals? How can and should#patientsinvolvement shape the education and the continuous professional development of our future healthcare professionals, and what can other professional learn from patients pic.twitter.com/akzK1pJYNG
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"
#RareDiseases and#EuropeanReferenceNetworks" event at Pisa on 22nd February organised by@ern_reconnet for#RareDiseaseDay: italian#ERN representatives will convene to discuss on good practices in rare diseases#ShareCareCure#PatientsInvolvement@EU_Health@EU_Commissionpic.twitter.com/BPPENVoAu0 -
Very productive day at
@LupusEurope meeting in Liverpool. Patients’ involvement in@ern_reconnet .#sharecarecure#patientsinvolvement#Lupus#ePAG#Europeanreferencenetworkpic.twitter.com/8zc6Z3SE9L
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#ERN_ReCONNET awesome team
never forgets to mention #patientsinvolvement . These guys are simply the
, aren’t they? #ERNeu#EuropeanCommissionhttps://twitter.com/ern_reconnet/status/1117037758411833344 …
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Leaving
#EBW2019 // Thank you@francescoflo and my awesome teammates@marywangCM and Richard Stephens: it has been a pleasure to work with you preparing our arguments for the Stakeholders Forum Debate#patientsinvolvement#biobankgovernance@BBMRIERICpic.twitter.com/xaxGcDz8Pd
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Cut to the chase and... Season's Greetings! #SeasonsGreetings#HappyHolidays#HappyNewYear2020#ShareCareCure#PatientsInvolvement#RareDiseases#EuropeanReferenceNetworks#ERNeu#ERNs@EU_Commission@EU_Health@SKyriakidesEU@eHealth_EU@eurordis@RareDiseasesEU@rare2030
pic.twitter.com/Q1hrSSLOpXPrikaži ovu nit -
The Expert Panel Consensus Meeting on
#PatientPathways is over but the path is traced (and a very happy birthday to Gema and Alain: their presence in Pisa on this special day deserved a special gift)#EPCMPP#SystemicSclerosis#ERNs#ERNeu#PatientsInvolvement#ShareCareCurepic.twitter.com/ffeq2ollaS
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On air: the second of two ERN ReCONNET Board of Network web-conferences on Monitoring, Affiliated Partners, New Members, Disease Coverage, Patient's pathways, updates and next phases
#ShareCareCure#PatientsInvolvement#ERNeu#RareDiseasespic.twitter.com/UpY2RxEK9Z
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This is important across
#patientsinvolvement especially where some Patient Groups receive funding from industry (ie Pharmaceutical companies) or other sources. -
Honoured to be part of a panel discussion chaired by Jani Mueller on "sharing experiences in setting up an HTA organisation" at
#HTAi2019Cologne. I'll bring the patient perspective and share why#patientsinvolvement is meaningful pic.twitter.com/YmveBrL6PB
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Every day is
#RareDiseaseDay for 300 million people. Every year, on the last day of February, we make their voice heard.@sil_aps@CharissaFrank@iaiaraia@jhgrunert@veramfpg@SjogrenpowerAna#RareDiseases#Awareness#patients#patientsinvolvement https://www.rarediseaseday.org/article/what-is-rare-disease-day …pic.twitter.com/5KeOaj3Qv0
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Thanks
@EUneurology for mentioning@MULTIACTProj as one of the projects working on#patientsinvolvement at#EPFCongress19. With our consortium partners we're glad to work on this key issue and looking forward to share our work!@eupatients@imi_paradigm@paolazaratinpic.twitter.com/FLulHlV6sK
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at #EULAR2019 you cannot miss#ERNReCONNET posters on#PatientsInvolvement
We will be there checking who’s missing 

https://twitter.com/ern_reconnet/status/1131894407052103680 …
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The best way to succeed is by working together, providing expertise, sharing enthusiasm and passion - there's no way back!
#RareDiseases#Registries#patients#PatientsInvolvement@istsupsan@EJPRareDiseases@EU_Healthhttps://twitter.com/DTaruscio/status/1177613691094802435 …
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@ern_reconnet Also my abstract has been accepted for#EULAR2019 for a poster#patientsfirst at#EULAR2019 The voice of#patients speaks out loud!#patientsinvolvement#ShareCareCure#EuropeanReferenceNetworks#ERNReCONNET@eular_org@eurordis@eupatientsforum@EU_Commission -
We agree with you
@LAlupusLady "Developing a framework that includes patients as collaborators in the Health IT system requires a commitment to be open to change and a willingness to try." Yes we do where do we sign up?#HealthIT#patientsinvolvement#Collaboration#looms4lupushttps://twitter.com/PCHAlliance/status/1136264088475115520 …
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